Maria Mutch, like the other moms we’re spotlighting during Autism
Awareness Month, is raising a child with Autism Spectrum Disorder (ASD). Her
son Gabe actually has a dual diagnosis – autism and Down syndrome.

I never knew how much I’d have to improvise as a parent. We read
the books. We eat the right foods. We avoid alcohol and cigarettes. We pick the
brains of all the veteran moms, hoping that checking off all these boxes prepares
us to parent. And in many ways, these things do.

But parenthood is this journey
of unexpected and unforeseen twists and turns, forcing us to become creative,
flexible and agile in ways we never could have anticipated. Never more so than
when your child is sick. Whether it is a passing illness, or like autism and
Down syndrome, lifelong.

Maria’s story is a tale of improvisation. In her book, Know the Night, a March release from Simon &
Schuster, she tells it in ways I cannot do justice here. She chronicles
the two-year span when Gabe, like so many ASD kids, rarely slept through the
night. In vivid detail, Maria describes those long, sleepless nights, and how
it affected her family. Maria had to not only think outside of the box, but origami the box to survive that season. She
employed a strategy you won’t find in any parenting book, but yielded an
incredible reward.

She loaded up her then-nine-year-old son, and took him, based on a
stranger’s almost random suggestion, to hear live jazz, first in a café and then
in local clubs. Not many kids in those places. She and Gabe probably stuck out
like sore thumbs. Not just because of Gabe’s age, but also the difficulties our
kids sometimes have regulating the noises they make and their bodily motions.

But something about jazz clicked for Gabe, even on that first night. He
connected with the music in a way Maria could never have predicted. And maybe
even connected with something inside of himself. And maybe, most beautifully,
struggling with a condition that makes socialization and human relationships
incredibly difficult, connected with his mother.

Q&A with Maria Mutch

TINA: In Know the Night you
use Admiral
Richard Byrd’s exploration into the Antarctic wilderness as a metaphor for the
isolation and loneliness you experienced when Gabriel wasn’t sleeping through
the night. What prompted that kinship you felt with Byrd’s experience?

Maria: Gabriel had developed his sleeping disorder
when I read Byrd’s book, Alone, which
I loved right away. I had never heard of Richard Byrd, so my first encounter
with him was through Alone and the
incredible descriptions of the ice and the night sky. Byrd was on his second
expedition when he attempted to stay in a hut by himself away from his men, but
after four months he needed to be rescued. The book is exciting in an unusual
way, because it’s basically an adventure story of someone staying put. I was
also interested in the effect that being alone has on the human mind, and
Byrd’s response to his situation made me look more closely at what Gabriel and
I were experiencing.

TINA: A lot of people don’t realize sleep
challenges are a part of the autism journey for so many. I remember
mind-numbing exhaustion during the day, and having to find things that kept me
sane. What kept you during that time? What still keeps you? Gives you something
beyond the day-to-day challenges?

Maria:
I had a hard time coping during the period of Gabriel’s sleep disorder
because the effects of sleep deprivation seemed to permeate everything. Among
the things that helped, though, was reading. Know the Night, in part, is about being a reader – a reader of Byrd’s
books, and books about Antarctica. I also started researching jazz, night, and
silence, too, and that investigation made the experience of being up at night
seem more rich and interesting. As well, taking Gabriel to hear live jazz was a
huge mood booster because we got to do something really enjoyable together. I’m
also a runner and that helped clear my mind and give me an endorphin fix when I
needed it.

TINA: You are parenting a child with multiple
diagnoses, autism and Down syndrome, actually also OCD. There are lots of moms
out there who don’t face that challenge, but we moms have stretches where the
demands of raising our kids and managing our lives leaves us feeling isolated
and lonely. Is there anything you could share to encourage moms who might be in
that space?

Maria: The lesson of Byrd’s experience is that we
need other people, but reaching out to others can seem like a tremendous risk. The
nature of loneliness is that it feels unique and it’s easy to forget how
universal it is. Maybe there is something about parenting, too, that can
amplify, at times, a sense of being alone. I have found it helpful simply to
know that there are other people who understand and know my situation. Also, remembering
how important care is – that is, caring for others and ourselves, too. Often when
I step outside myself and focus on someone else, I end up feeling more
connected and less alone.

TINA: When we first got our diagnosis, it
radically affected our friendships. Many of our friends didn’t understand what
we were going through. And so many public and social situations became
difficult. We turned in a lot and stayed home more than we ever had. More than
we should have. I called our home a pressure cooker, with very little steam
actually getting out! How did this season affect your friendships?

Maria: If you have a child who needs a lot of
support to be outside the home, it can be a challenge to stay connected with
other people. I think most of our friends have understood, and we’ve gotten
better over the years at communicating what we need. I’ve become more aware of
the importance of a supportive network, though building one takes patience.
Reading about Byrd also drove home for me the importance of other people, since
he was essentially in solitary confinement and the effect was almost
catastrophic. As for relieving the pressure cooker, I think that means honoring
the you of you – the real you, the one
who has outside interests, the one who isn’t necessarily just a mother or a
partner. Staking a claim around that is vital.

TINA: You say you’ll never tire of the way music
affects Gabe. I often struggle to connect with my son, who is on the more
severe end of the spectrum, and has very limited language even at 13. I saw the
music as a way for Gabe to connect with something in himself, but also to
connect with you. What does connection with Gabe, who doesn’t have language,
look like for you?

Maria: Connecting with Gabriel is definitely
enhanced through music. He loves all kinds, including jazz, and he also gets
music therapy. It really opens him up. When we go to hear live performances, I
feel like Gabriel and I are escaping some of the heaviness together. He can
connect with his community, as well, in a simple, almost effortless way. And on
the occasions when it goes badly (as sometimes happens), we can slip out and
try again another time. Over the years, I’ve also changed. When Gabriel was
very young, I felt so much pressure to be doing therapy of various kinds all
the time. It was like we were racing to make him better. I realize now that
there is no point to our existence if fun is missing – my partner and I put a
much greater emphasis now on the enjoyment of each individual family member.
That can mean having to be more organized and to rely on outsiders to help us,
but it’s always worth it.

Good
Stuff

Let’s end with a little Flash &
Trash. Just give me the first “good” thing that comes to mind…

Good
Book: Anything by Joan Didion.

Good
Grief: The inflated cost of any
toy/device/therapy/supplement having to do with special needs.

Good
Music: Jazz, either classic or
contemporary.

Good
Food: Our family is vegetarian, so
cuisine like Indian or Thai comes to mind as presenting us with lots of
delicious options. Also picnics; we were picnic fanatics when the boys were
younger.

Good
Day: One where my partner, my two
boys and I each go out into the world (or in my case, I go to my home office)
and come back safe and happy and ready to connect again.

Good
Night: One where I sleep straight through, after some great reading.

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About Tina Dula

Tina Dula is a wife to the love of her life, mom to a special, beautiful son, and a friend to those living with autism through her foundation Myles-A-Part, serving Georgia families. Her writings have appeared in Chicken Soup for the Soul and USA Today, and she has been featured on the Montel Williams Show, NPR, Headline News and others. She writes contemporary romance and women's fiction under the pseudonym Kennedy Ryan. 25% of her royalties go toward her own foundation and to her national charitable partner, Talk About Curing Autism (TACA). Learn about her books at Kennedy Writes.